Meniere's Disease Medications URGENTLY Needed on the PBS

Meniere’s disease has been described “as one of the most debilitating diseases experienced by people who survive any illness”. [1]

The symptoms of Meniere’s disease can lead to sudden debilitating attacks, loss of employment, social isolation and loss of confidence and personal capabilities in everyday living activities, yet this life changing balance & hearing disorder receives no attention.

FAMILIES ARE IN CRISIS

“My sister killed herself because of Meniere's Disease. The attacks were coming with an unrelenting intensity that would last for weeks and months. The side effects of depression and anxiety is under reported and the cost of medicating this disease is ridiculous, particularly for people that simply can't work because they can't leave their bed.” - Leah F, NSW

“My Mum suffered from this for her entire adult life. I can remember her losing control on many occasions and falling flat on her face on the floor. As a child it frightened the hell out of me. She couldn't drive, go out alone or do any of the things that most folk take for granted.” - Kim C, Dagun

“I'm signing because I use Serc regularly to control my Ménière's disease. I experience debilitating attacks of vertigo that confine me to bed often for more than 24 hours at a time. Serc helps with these symptoms. It is not a nice extra in my life but a necessity as I care for my terminally ill husband. It should be on the PBS so that it can be obtained like any other necessary drug.” - Caroline B, Australia

1 in 600 Australians have Meniere’s disease, this equates to approximately 40,120 Australians (more than double of those with Multiple Sclerosis) but where is the community awareness or government support?

“Patients with Ménière’s disease are severely incapacitated by their illness. In acute episodes, Ménière’s disease seems to be one of the most debilitating diseases experienced by people who survive any illness. All instruments seem to indicate that Ménière’s disease is serious in its physical and mental health consequences.” [3] Symptoms include fluctuating low frequency hearing loss, aural fullness, tinnitus, dizziness, vertigo attacks, brain fog, depersonalisation, nystagmus, and frightening drop attacks.

FINANCIAL STRESS FROM EXPENSIVE MEDICATION

“I am myself in the process to see if I have Meniere's and have started on medication. As a pensioner I was disappointed that the medication is not on the PPS. In fact, I delayed getting medication due to lack of funds.” - Kaylah H, Australia

“I have Menieres and on a small income. Other medications I need to take that are not on PBS in addition to Serc are causing financial and emotional stress, when I can't afford them when I am unwell with Menieres and can't work and subsequently don't get paid. To have Serc on the PBS would relieve a great deal of pressure on me and my family.” - John H, Australia

As scary as Meniere’s disease is, what is perhaps more alarming is that there is currently no medication benefit on the PBS for Australian’s struggling with the condition. So in addition to dealing with a debilitating chronic illness and the financial hardship that accompanies it, sufferers must also spend thousands of dollars each year on expensive medication just to maintain some quality-of-life, employment and social interaction.

EXPENSIVE MEDICATION NEEDED TO SURVIVE

“I can't survive a day without medication but they are just so expensive.” - Hazel S, Australia

“I have Ménière's disease and currently spend over $120 a month on medication.” - Lesley C, Quakers Hill

“I have Ménière's Disease. Currently I am unable to work, and Serc is currently costing me approx $20 per packet. With the current dosage of Serc I am on, a packet doesn't last a week.” - Christine P, Flowerdale

There are three medications that Meniere sufferers desperately need to manage their symptoms, but they are outrageously expensive, so many sufferers are going without their prescribed medication because they simple cannot afford it. $$$$$

Betahistine, ondansetron and valacyclovir are clinically effective, have proven efficacy, and are safe and cost-effective compared with other treatments available.

MENIERE’S IS A LIFE LONG STRUGGLE

“I have suffered with Menieres for over 30 years. Severe loss of hearing, nausea and frightening drop attacks. Medication has been essential. Medication is expensive." - Irene K, Ararat

AUSTRALIANS CALL ON THE FEDERAL GOVERNMENT FOR SUPPORT

“I work in the audiology industry and there is not enough support for this disease.” - Kirsty R, Australia

“I have a good friend who suffers with this and struggles to afford the medication. It’s not fair! and it is not right!” - Tara-Louise B, Australia

We call on your support to URGENTLY add these medications to the PBS for the benefit of people with Meniere’s disease, to alleviate the financial burden and improve their quality-of-life.

Show you care. Please SIGN & SHARE this petition.

Thank you for your support.

For more in depth information on this petition, or to learn more about Meniere's disease and other chronic balance disorders, go to Whirled Foundation.

You can help the advocacy work of Whirled Foundation by DONATING HERE.